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The HeLa Genome: An Agreement on Privacy and Access

The field of genomics has equipped scientists and clinicians with powerful tools to study the role that our genetic blueprint plays in our health. Increasingly, such knowledge is enabling health care professionals to diagnose, treat, and even prevent diseases more precisely based on each person’s unique genetic profile. However, the very thing that gives these tools their beneficial power—the ability to identify an individual’s disease risks—also raises questions about maintaining anonymity of research participants. The issue rose to the surface of public consciousness in March 2013 when researchers sequenced the genome of the first and most widely used human cell line, called HeLa, and posted the data online.

The circumstances surrounding the HeLa cell line are unusual because the donor of the original cells—the late Henrietta Lacks—had been identified in scientific journals and eventually made famous by a BBC documentary, newspaper articles, and a bestselling book. As a result, Ms. Lacks and many of her descendents are known by name to millions of people. It quickly became apparent that the publicly posted HeLa genome data and what it might reveal about Ms. Lacks’ disease risks could have implications for her descendants. Consequently, the data were removed from public view.

Because of the unique concerns posed by the HeLa genome data, NIH and the Lacks family worked together to develop a solution that allows researchers access to this valuable resource while respecting the wishes of the family. That historic agreement and the collaborative discussions that made it possible are outlined by me and Kathy L. Hudson, Ph.D., NIH Deputy Director for Science, Outreach, and Policy, in the Nature Comment below.